Thursday, January 26, 2012

POTS is NOT a rare illness!

I keep hearing the phrase "rare" disease, "rare" illness, and "rare" disorder.  I am guilty of using this phrase myself.

But what is "rare"?  Not regarding steak, but in terms of an illness or disease?

The National Institutes of Health (NIH)  defines a rare disease or illness as:

"The prevalence of a rare disease is usually an estimate and may change over time. A rare (or orphan) disease is generally considered to have a prevalence of fewer than 200,000 affected individuals in the United States. Certain diseases with 200,000 or more affected individuals may be included in this list if certain sub-populations of people who have the disease are equal to the prevalence standard for rare diseases."

Now lets look at POTS. 
Postural Orthostatic Tachycardia Syndrome is defined by Low 

"POTS is defined as the development of orthostatic symptoms associated with a heart rate (HR) increment >or=30, usually to >or=120 bpm without orthostatic hypotension. Symptoms of orthostatic intolerance are those due to brain hypoperfusion and those due to sympathetic overaction." in The Journal of Cardiovasc Electrophysiol. 2009 Mar;20(3):352-8. Epub 2009 Jan 16, Postural tachycardia syndrome (POTS).

POTS is listed in the Rare Disease Network, whose definition for a rare disease is listed above.  Does this mean there are less than 200,000 people with POTS?  I hope not, because the medical literature says NO.  

In fact, according to various medical literature sources, an estimated 500,000-1 million people suffer from POTS. 

POTS - 500,000 to 100,000,000 people
Multiple Sclerosis (M.S.) - 250,000 people
Parkinson's Disease - 500,000 people

POTS:   1 out of 100 teenagers
Autism: 1 out of 110 children
So that makes POTS more common than MS (Multiple Sclerosis) and Parkinson's.  More common than Autism.  More common than many diseases that doctors know about, diagnose, and do not blow off as anxiety or stress related.   And it can be just as debilitating, and sometimes more so.   Here are some other interesting quotes:

"Twenty-five percent of people with POTS are disabled and unable to work (Goldstein, Robertson, Esler, Straus, & Eisenhofer, 2002). Most patients will have to make some lifestyle adjustments to cope with this disorder.
It was once estimated that nearly 500,000 Americans had POTS, which made standing up a challenge (Robertson, 1999). However, with research advances and growing physician education the number of people found to have POTS symptoms is steadily rising. It is now estimated that one out of every hundred teens has POTS (Fischer, 2007)."

***From Grubb BP, Kanjwal Y, Kosinski D. The postural tachycardia syndrome: a concise guide to diagnosis and management. J Cardiovasc Electrophysiol. 2006; 14: 108–112:

"POTS patients have been reported to suffer from a degree of functional impairment similar to that seen in conditions such as chronic obstructive pulmonary disease and congestive heart failure, yet these patients are all-too-frequently misdiagnosed as having severe anxiety or panic disorder.4,5 "

All this, and POTS is not even listed with the Social Security Disability folks as a disabling disease!  There is no medical billing code for POTS.  This has to change.

 We need to ALL agree to stop calling POTS rare, because it is not.  It is rarely known and rarely diagnosed, due to a lack of awareness and consensus in the medical community.  But it is not rare.

***So Lauren from POTSgrrrl and I have decided we may have been separated at birth.  She and I are teaming up to do something about this, and have been talking and planning a lot lately.  I had  this article written and scheduled to post for today.  She then proceeded to write a great article with almost the same exact title and similar content this morning!!!  So I called her up and asked if we should publish these on the same day, or if I should wait - but we decided that the more people are talking about this the better.

Write your own article, or re-post one of ours, 
or do something today to spread the word that  


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